Most people remember where they were when they heard about JFK’s assassination or the Challenger explosion or 9/11. But for us parents whose children were diagnosed with HLH, we’ll never forget the date of diagnosis for our children. The diagnosis was so life-altering that it’s seared into our consciousness, forming the beginning of our shared experience.
A parent on the HLH Facebook support page confirmed this recently when she asked if anyone else remembered their diagnosis date; post after post of dates provided her answer. I’ve written about our diagnosis day before, along with all of the important dates leading up to and following it. We’ve already begun anniversarying them, causing me repeated pause as I think about what our lives were like one year ago. At this point last year, we knew Megan was sick, but still didn’t know the upheaval that was coming. That same Facebook page also reminds me how profoundly blessed we are for her remission, as other parents celebrate anniversaries of very different outcomes. I offer them my sincere condolences and then feel terribly guilty, knowing that there is no way we can ever understand why our stories ended so differently.
These sobering reminders leave me feeling both blessed and sad…blessed for our happy ending, sad for others not as fortunate. Guilt won’t accomplish anything, I tell myself. These are the kinds of inequities which pose the big fundamental ‘why’ questions. All I can do is say a prayer for those who have lost and a prayer of thanks for our family. And keep going, determined to never forget how grateful and blessed we are.
“In three words I can sum up everything that I’ve learned about life: it goes on.” –Robert Frost